I have sat in the NICU and waited.
I have cried and prayed.
I have endured.
Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.
I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.
I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.
Whether I parent a preemie with physical challeges or medical issues, I will not be careless with my love.
I will be a better mother for all that I have endured.
I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely.
I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard.
I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.
Yes I will be a wonderful mother.
-Author Unknown ♥ ♥
Wednesday, July 25, 2012
Saturday, July 14, 2012
Home!
The girls are now HOME!!! They were released yesterday and we're so glad to have them home with us. As you can imagine, its a bit hectic for the moment, so I'll post a few photos and update later.
Thursday, July 12, 2012
Finally...
Finally the finish line is in sight! We were told today that if the girls gain weight and pass the car seat test, that we can take them home on Saturday. A part of me doesn't quite believe it yet, and may not believe it until Saturday when we're putting them in the car. I didn't know this journey would be so difficult, long, and emotionally/physically exhausting. I have been admitted or visiting the hospital every day since March. It really has been a long time! This week marks 12 weeks since I had the girls and 15 since I was admitted. Needless to say, we will not miss the hospital. I will however miss some of the nurses we've had... the girls have gotten such good care. I can't say enough positive things about it.
Since I have not updated for a couple of weeks, I'll update what has happened with Lily and Claire lately. Lily's blood pressure was high for a few days in a row and they decided to order her a kidney ultrasound. Claire's blood pressure was border line high, so they decided to give her one too. The results showed that Lily's kidneys seem to be fine-- there was question whether one of her renal arteries was smaller than normal but the nephrologist decided it looked fine. Claire's ultrasound showed two small renal arteries, calcification, and overall her kidneys showed up bright. The nephrologist explained to me that the brightness indicated past trauma (and we all know how stressed her kidneys were shortly after birth). The calcification also is a sign of trauma. She reminded me how lucky Claire is and told me that she's going to be just fine. She'll have a follow up in 3 months and is at increased risk for hypertension in the future, but she decided to not do anything regarding their blood pressure since it's just borderline right now. We'll continue to watch it, just in case.
Lily and Claire both have had some issues eating. When feeding them, they would act like they were in pain and not want to take their full feeding by mouth. After a few weeks of this, they decided to order a swallow study. A swallow study takes films of the baby feeding and shows if any of the milk comes back up (reflux). They also thicken the feeding as they are taking pictures to determine what thickness works the best for the baby. It was determined that Claire has moderate reflux and Lily's is a bit less severe. As soon as they thickened their feeding the girls have done so much better. They no longer seem uncomfortable and eat larger amounts. Because this seems to finally be under control, home is right around the corner! We can't wait to finally have some normalcy again... or what will become our new normal at least (with twin babies in the house)! :)
We'd like to thank everyone for the kind words, thoughts, and prayers sent to the girls throughout this time. I cannot count the number of emails, cards, etc I have received from family, friends, and strangers who have been touched by their story. Prayer chains were started in several states and even in a couple different countries. It's pretty neat to think that two little girls, less than 4 pounds total at birth, have made such a difference already & touched so many lives. Joe and I are so blessed to be able to call Lily and Claire 'ours'. We're completely amazed by their strength, fight, and will to live. We've learned that strength has nothing to do with size. This journey has taught us just how fragile life is, and what really matters. We are so glad to be at the end of this road.
Since I have not updated for a couple of weeks, I'll update what has happened with Lily and Claire lately. Lily's blood pressure was high for a few days in a row and they decided to order her a kidney ultrasound. Claire's blood pressure was border line high, so they decided to give her one too. The results showed that Lily's kidneys seem to be fine-- there was question whether one of her renal arteries was smaller than normal but the nephrologist decided it looked fine. Claire's ultrasound showed two small renal arteries, calcification, and overall her kidneys showed up bright. The nephrologist explained to me that the brightness indicated past trauma (and we all know how stressed her kidneys were shortly after birth). The calcification also is a sign of trauma. She reminded me how lucky Claire is and told me that she's going to be just fine. She'll have a follow up in 3 months and is at increased risk for hypertension in the future, but she decided to not do anything regarding their blood pressure since it's just borderline right now. We'll continue to watch it, just in case.
Lily and Claire both have had some issues eating. When feeding them, they would act like they were in pain and not want to take their full feeding by mouth. After a few weeks of this, they decided to order a swallow study. A swallow study takes films of the baby feeding and shows if any of the milk comes back up (reflux). They also thicken the feeding as they are taking pictures to determine what thickness works the best for the baby. It was determined that Claire has moderate reflux and Lily's is a bit less severe. As soon as they thickened their feeding the girls have done so much better. They no longer seem uncomfortable and eat larger amounts. Because this seems to finally be under control, home is right around the corner! We can't wait to finally have some normalcy again... or what will become our new normal at least (with twin babies in the house)! :)
We'd like to thank everyone for the kind words, thoughts, and prayers sent to the girls throughout this time. I cannot count the number of emails, cards, etc I have received from family, friends, and strangers who have been touched by their story. Prayer chains were started in several states and even in a couple different countries. It's pretty neat to think that two little girls, less than 4 pounds total at birth, have made such a difference already & touched so many lives. Joe and I are so blessed to be able to call Lily and Claire 'ours'. We're completely amazed by their strength, fight, and will to live. We've learned that strength has nothing to do with size. This journey has taught us just how fragile life is, and what really matters. We are so glad to be at the end of this road.
Tuesday, June 26, 2012
38 gestational weeks
Happy 38 gestational weeks to Lily and Claire!
It's hard to believe we're finally at the place where I would have delivered, had the girls not come so early. Lily is weighing in at 5 lbs 14 oz and Claire is 4 lbs 6 oz. It seems like everyday I notice them getting bigger now-- Lily is even wearing newborn clothes and graduated from preemie size a week ago. Claire, of course, is still wearing preemie and will for a while. Both girls have mastered pulling out their feeding tubes. Yesterday Lily actually pulled hers out, along with the tape that keeps it sticking to her face, and somehow got it out of her crib and to the floor next to her. The nurse and I laughed imagining this tiny baby pulling it out and throwing it all onto the floor. :)
We're still working on them feeding by mouth, which is what is keeping them at the hospital. I'm told that they will just one day "get it" and take off. We're so excited for that day to finally come, because we can't wait to bring them home! The NICU has been a long journey that we are excited to put behind us...
Monday, June 18, 2012
My apologies for not updating any sooner. Things are hectic in our house as we're doing last minute projects to have the house ready for the girls. They are doing great- Lily is weighing in at 5 lbs 5 oz and Claire is 3 lbs 14 oz. Their growth in the past couple of weeks has been amazing. Claire is now in a crib (like Lily has been) and both girls are off all oxygen. It's so nice seeing them without nasal cannulas.
They are still working on their feedings. As soon as they are able to take all feedings by mouth, then they get to come home. Depending on the day/how sleepy they are, usually determines how much they decide to take by mouth. The nurses say that this usually takes the longest and is the most frustrating. Probably because we're SO close to home, and waiting when something is within reach seems to take forever.
We had a professional photographer come in to take photos of the girls. So far we've seen the sneak peak pics, and they are adorable. Zane also was able to hold Lily and Claire for the first time-- it was pretty special, even though I think he was a bit scared of hurting them. Here are the photos:
Monday, June 4, 2012
Day 40...something!
Lily and Claire are both doing great. The past week has given us some positive and exciting changes. Lily is now in a crib, and has been since May 31st. Since she graduated from her giraffe bed (incubator), it means she is now in baby clothes and is able to maintain her own temperature. Her next obstacle is to learn to bottle andd breast feed and get off the little oxygen needed. Claire is also doing great. She is in clothes also, and is able to maintain her temperature on her own. If not for her low weight, she'd Also be in a crib. Both girls are getting fed every three hours for 30 minutes. Lily weighs 4 lbs 5 oz and Claire weights 2 lbs 13 oz. Its been so fun to see such positive progress and be so much closer to bringing them home. We are still weeks away, but its within reach now!
Wednesday, May 30, 2012
Update on Lily
I put off posting for a few days, because it isn't as fun to update with news that isn't just that things are going great. Things with the girls are still going very well, but Lily's follow up ultrasound wasn't exactly what we expected. The nurse practitioner tried to explain things to us (as you can see from my post before) but didn't go into the detail that the neonatologist gave us. What we found out, is that the report from one radiologist was worded strange, so Dr. Zac spoke with the pediatric radiologist. They ended up meeting and going over Lily's ultrasound together too.
Lily's bleed is still there, but what was noted are cysts outside of the bleed. This is known as Periventricular Leukomalacia (PVL). The doctor was fairly sure he saw these cysts in the ventricle-- although hers are very small and very close to the brain bleed. The cysts are essentially small dead areas that had trauma, likely in the days/hours before she was born. It seems Claire wasn't the only one stressed in the womb like we originally thought. They decided that since the ultrasound wasn't very clear, they will do a follow up in a couple of weeks. This will give us a more definite answer regarding PVL. If that ultrasound is also fuzzy, then they may opt to do an MRI.
So, what do these cysts mean, if Lily has a definite diagnosis of PVL? It ranges depending on the severity of them. Right now, Lily's cysts are very small and there are not a lot of them. It is also unilateral, which is great. This is all in her favor, and we're hoping if the cysts are definitely there, that it doesn't change. The results will be one of three things. 1) The ultrasound was just a bad picture and after all, she doesn't have PVL because it wasn't outside of the bleed. This option isn't all that likely, but still a small possibility. 2) No change (Dr. Zac believes this is a pretty likely to happen). 3) The bleed is dissolving more and we see more cysts/dead areas. This is obviously the last scenario we want. These dead areas are in the white matter of the brain- an area which is linked to motor control. The dead areas could result in nervous system issues (from slight motor control problems that physical therapy can help correct, to cerebral palsy in more severe cases). There is also a chance, that if there is no change in her ultrasound, that we see no difference in Lily at all- and she grows just the same as a regular child. We won't know this until she begins to move more (usually ages 1 to 2 would give us a better idea). Thankfully, she IS a newborn and the brain is still developing... meaning, even though very small areas of the brain may be dead, she will be able to use other areas just the same.
Obviously all of this information was a lot to take in at first. No parent wants to hear that there could be a possibility of developmental issues, and that there is nothing we can do but wait. But, we have accepted that 'it is whatever it is' and that through all of this, God has a plan. No matter what happens, it won't change Lily and it certainly won't change how much we love her. We appreciate everyone's prayers and support and ask for continued prayers for the girls.
Lily's bleed is still there, but what was noted are cysts outside of the bleed. This is known as Periventricular Leukomalacia (PVL). The doctor was fairly sure he saw these cysts in the ventricle-- although hers are very small and very close to the brain bleed. The cysts are essentially small dead areas that had trauma, likely in the days/hours before she was born. It seems Claire wasn't the only one stressed in the womb like we originally thought. They decided that since the ultrasound wasn't very clear, they will do a follow up in a couple of weeks. This will give us a more definite answer regarding PVL. If that ultrasound is also fuzzy, then they may opt to do an MRI.
So, what do these cysts mean, if Lily has a definite diagnosis of PVL? It ranges depending on the severity of them. Right now, Lily's cysts are very small and there are not a lot of them. It is also unilateral, which is great. This is all in her favor, and we're hoping if the cysts are definitely there, that it doesn't change. The results will be one of three things. 1) The ultrasound was just a bad picture and after all, she doesn't have PVL because it wasn't outside of the bleed. This option isn't all that likely, but still a small possibility. 2) No change (Dr. Zac believes this is a pretty likely to happen). 3) The bleed is dissolving more and we see more cysts/dead areas. This is obviously the last scenario we want. These dead areas are in the white matter of the brain- an area which is linked to motor control. The dead areas could result in nervous system issues (from slight motor control problems that physical therapy can help correct, to cerebral palsy in more severe cases). There is also a chance, that if there is no change in her ultrasound, that we see no difference in Lily at all- and she grows just the same as a regular child. We won't know this until she begins to move more (usually ages 1 to 2 would give us a better idea). Thankfully, she IS a newborn and the brain is still developing... meaning, even though very small areas of the brain may be dead, she will be able to use other areas just the same.
Obviously all of this information was a lot to take in at first. No parent wants to hear that there could be a possibility of developmental issues, and that there is nothing we can do but wait. But, we have accepted that 'it is whatever it is' and that through all of this, God has a plan. No matter what happens, it won't change Lily and it certainly won't change how much we love her. We appreciate everyone's prayers and support and ask for continued prayers for the girls.
Wednesday, May 23, 2012
I posted a while back regarding Lily's head ultrasound at 1 week old that showed a grade 1 brain bleed. The doctors told us not to be worried about it, because grade 1 brain bleeds will clear up on their own. One neonatologist said that, "If you take 100 babies with a grade 1 brain bleed, and 100 babies without a bleed- in one year you'd never know which were born with one and which never had one." So, we tried not to worry about it, but its been in the back of our minds since we got her results back.
They did a repeat head ultrasound 3 weeks later (at one month old). Claire's results were again normal, with no bleed. Lily's ultrasound still showed the bleed with a cyst. We met with a nurse practitioner who told us that the cyst is in the white matter, and in a location that COULD cause some slight issues with her lower extremity movement. Because of the location, she wanted to start occupational/physical therapy so that her brain will use alternate routes around the cyst & hopefully it will be no problem at all in her future.
I spoke with a neonatologist who said he thought the bleed was beginning to dissolve, but the other neonatologist wanted to speak with the radiologist about his report because he was a bit confused about it. So, right now we're waiting to hear back from him. Either way they will repeat the ultrasound in 3 weeks. Please keep Lily in your prayers.
Here are some recent photos:
May 20, 2012
May 19, 2012
Lily going onto low flow nasal cannula! May 19, 2012
Dad and Claire, bath time May 22, 2012
They did a repeat head ultrasound 3 weeks later (at one month old). Claire's results were again normal, with no bleed. Lily's ultrasound still showed the bleed with a cyst. We met with a nurse practitioner who told us that the cyst is in the white matter, and in a location that COULD cause some slight issues with her lower extremity movement. Because of the location, she wanted to start occupational/physical therapy so that her brain will use alternate routes around the cyst & hopefully it will be no problem at all in her future.
I spoke with a neonatologist who said he thought the bleed was beginning to dissolve, but the other neonatologist wanted to speak with the radiologist about his report because he was a bit confused about it. So, right now we're waiting to hear back from him. Either way they will repeat the ultrasound in 3 weeks. Please keep Lily in your prayers.
Here are some recent photos:
Thursday, May 17, 2012
One Month Down!
They both continue to see occupational therapy for their thumbs (which is likely due to lack of space in the womb) and speech therapy. Speech therapy is trying to get them ready for breast and bottle feeding, which will begin soon. Lots of exciting things in their future! :)
(5/17/12)
Friday, May 11, 2012
I promise I'll post Lily photos soon, this is the only one I had on my cell phone!
The neonatologist told us today that Claire's sodium is now in the normal range. This is important, because its an indicator of kidney function (along with her creatinine). This is another big step in the right direction! As of yesterday, Claire hit 2 pounds even! Lily is weighing in at 2 lbs 12 oz. It's amazing how much bigger she looks in comparison to her sister. 12 ounces is a big deal when we're at the two pound mark! :) In Claire's photo, you can see the sling on her left hand. Occupational therapy decided to make one for Lily too, so now they have one more thing in common.
This week has been fairly uneventful in the NICU... and in the NICU uneventful is really good!
Wednesday, May 9, 2012
3 weeks down...
Today Lily and Claire turn 3 weeks old, and yesterday they turned 31 gestational weeks. We feel blessed to have three weeks behind us, and look forward to hopefully the next few weeks being a bit more steady. Today they have started weaning the girls off their oxygen. It's a slow process, but they are now on one liter of oxygen instead of two. So far so good.
Lily is still eating at 7 ml/hr and all of her blood work has come back normal. Claire is at 6 ml/hr and had fortifiers added in, but has since had it taken away. The fortifiers add extra calories but also has sodium in it. Since her sodium is on the high side, they decided to cut that out of her diet. They are keeping her on protein though. Her creatinine is 1.4 which is still high, but considerably lower than it was before. The doctors seem pleased with it continuing to drop. Yesterday Claire had a blood transfusion because of low red blood cells. The neonatologist said that it isn't unexpected and he's actually surprised that she made it so long without one (since they draw blood on her so often). Everything went smoothly with her transfusion.
Both girls see occupational therapy every day, and are now also seeing speech therapy. The speech therapist said that both girls take their pacifier and can suck well on it. This is great news regarding when they can begin taking a bottle or breast feeding. She said we can begin around 32 or 33 weeks but they would like to have them off their high flow nasal cannula first. Overall, things are definitely moving in the right direction.
Lily is still eating at 7 ml/hr and all of her blood work has come back normal. Claire is at 6 ml/hr and had fortifiers added in, but has since had it taken away. The fortifiers add extra calories but also has sodium in it. Since her sodium is on the high side, they decided to cut that out of her diet. They are keeping her on protein though. Her creatinine is 1.4 which is still high, but considerably lower than it was before. The doctors seem pleased with it continuing to drop. Yesterday Claire had a blood transfusion because of low red blood cells. The neonatologist said that it isn't unexpected and he's actually surprised that she made it so long without one (since they draw blood on her so often). Everything went smoothly with her transfusion.
Both girls see occupational therapy every day, and are now also seeing speech therapy. The speech therapist said that both girls take their pacifier and can suck well on it. This is great news regarding when they can begin taking a bottle or breast feeding. She said we can begin around 32 or 33 weeks but they would like to have them off their high flow nasal cannula first. Overall, things are definitely moving in the right direction.
Saturday, May 5, 2012
"Stable"
Lily and Claire are both doing well. Lily is now up to 2 lbs 8 oz and Claire is 1 lb 14 oz. We're very excited for Claire to reach the two pound mark! For the past couple of days they have been talking about removing Claire's PICC line. The reason they haven't removed it yet is because her sodium is high. A while ago her sodium was low, so they added some to her TPN... and they believe they just over compensated which is causing it to be high now. It should go down now that its been removed from her TPN. I'm hoping by tomorrow they are able to remove her line. She is back on her nasal cannula after having it removed for a couple of days. It was so crazy to see such a tiny baby without ANY breathing support. She did really well for those two days, but had one day where she struggled a bit without it. So, they put her back on the high flow cannula and she seems content. The doctors mentioned that this was a possibility and to not be concerned about it. They don't consider it a set back but normal for a baby at her gestation. Lily is still on her high flow nasal cannula too. She hasn't had many changes since my last update, aside from them continuing to up her feedings (along with her sisters) and adding in extra protein and vitamin D. Claire is getting extra calories in her breast milk to stimulate weight gain.
This evening when Joe and I were at the hospital, both girls were awake and had their eyes open. The nurse commented on how good they looked and how active they are. I asked the nurse practitioner how they are doing in comparison to other babies born at their gestation and she told me that they are doing awesome. It's so good to hear that they are doing well and see them growing a little bit every day.
Zane took a sibling class today at the hospital. I wish we would have remembered the camera, because they were teaching them to gently hold the baby, burp them, wrap them, etc. He wasn't very careful, to say the least! As all of the kids were being so careful with their baby dolls, Zane was pretending to burp his and the doll was half way down his back-- holding onto it by the legs. It may be a while before I can leave him in the room alone with the girls! :)
This evening when Joe and I were at the hospital, both girls were awake and had their eyes open. The nurse commented on how good they looked and how active they are. I asked the nurse practitioner how they are doing in comparison to other babies born at their gestation and she told me that they are doing awesome. It's so good to hear that they are doing well and see them growing a little bit every day.
Zane took a sibling class today at the hospital. I wish we would have remembered the camera, because they were teaching them to gently hold the baby, burp them, wrap them, etc. He wasn't very careful, to say the least! As all of the kids were being so careful with their baby dolls, Zane was pretending to burp his and the doll was half way down his back-- holding onto it by the legs. It may be a while before I can leave him in the room alone with the girls! :)
Wednesday, May 2, 2012
Happy 2 weeks Lily and Claire!
Tonight was a very special night-- I was able to hold the girls at the same time! Finally what I've been waiting for...
When the nurse put them on me, they immediately started breathing better and their heart rates went down- they became more relaxed. During the day, Claire was using more oxygen than usual- she went to around 50 ccs. When I held them together, she dropped to between 6-12 ccs. Lily went to room air for a while.
Claire even sucked on Lily's arm, which didn't bother her any. :) The entire time I held them, they did so well and their stats were great. It was pretty amazing to finally see them close together... and even more amazing to see the connection they have with each other.
We just love them so much!
Tuesday, May 1, 2012
30 gestational weeks
Today marks 30 gestational weeks for Lily and Claire. It feels good to be in the 30's! The girls are doing pretty well. Lily is now weighing 2 lbs 3 oz. Last night she weighed 2 lbs 4 oz, but since it's just an ounce, it isn't concerning. Claire weighs 1 lb 11 oz. They are now seeing an occupational therapist and have gotten new pads to lay on. The new pad allows as little pressure as possible against their bodies, which will help with keeping their heads round. They are very picky about how they lay, and always want to lie on their stomachs... so we're hoping this helps. The therapist also noticed that Claire tends to keep her thumbs in, so they made a brace for her hand. The brace is switched during 'cares' every 4 hours. During this time they also do hand exercises.
Tonight during cares, Claire's temperature was 101.6, she was breathing very quickly, and her heart beat was around 200. The neonatologist and nurse practitioner checked her out & were concerned. She had just gotten a new bed at 6 pm, so they decided to put her into a new bed hoping it was her external environment and not her body causing the temperature to rise. Thankfully, switching her has seemed to solve the problem. Her creatinine this morning was 2.0, and is continuing to drop. Her BUN is doing the same thing, so it's hopeful that these numbers will soon be within normal range.
Tonight during cares, Claire's temperature was 101.6, she was breathing very quickly, and her heart beat was around 200. The neonatologist and nurse practitioner checked her out & were concerned. She had just gotten a new bed at 6 pm, so they decided to put her into a new bed hoping it was her external environment and not her body causing the temperature to rise. Thankfully, switching her has seemed to solve the problem. Her creatinine this morning was 2.0, and is continuing to drop. Her BUN is doing the same thing, so it's hopeful that these numbers will soon be within normal range.
Sunday, April 29, 2012
2 Steps Forward
Today was a pretty big day for the girls. Claire has graduated from her nasal cannula and is breathing completely on her own now. Actually, they decided to take her off of it last night after Joe held her for a while. She's done great without it since. Lily tried to go off of hers for a short while, but they decided to put her back on. Hopefully she decides to forgo hers soon too!
Tonight Joe and I will give Lily her first bath. She is on full feeds for her size now, so they were able to remove her IV. They put an IV in the other day because they had to remove her PICC because it wasn't looking well. I'm so glad to see both go, and I'm sure she's feeling more comfortable now. Once Claire gets to full feeds her PICC can be removed, but she has a few days before that will happen. Lily is on 5 ml/hr of breast milk and Claire is now on 3 ml/hr. Every day they have increased feeds and both have responded well-- which is why they can continue to slowly increase them until they reach full feedings. Since Claire is not on full feeds and because they want her to gain weight, they add in extra calories.
Last night Joe and I were able to hold both girls at the same time. It was so great to have them both out at once. The nurse said that once they get rid of a couple of lines, I will be able to hold them both at the same time... I can't wait to see how they respond when they are close together again-- its going to be a very special moment.
Tonight Joe and I will give Lily her first bath. She is on full feeds for her size now, so they were able to remove her IV. They put an IV in the other day because they had to remove her PICC because it wasn't looking well. I'm so glad to see both go, and I'm sure she's feeling more comfortable now. Once Claire gets to full feeds her PICC can be removed, but she has a few days before that will happen. Lily is on 5 ml/hr of breast milk and Claire is now on 3 ml/hr. Every day they have increased feeds and both have responded well-- which is why they can continue to slowly increase them until they reach full feedings. Since Claire is not on full feeds and because they want her to gain weight, they add in extra calories.
Last night Joe and I were able to hold both girls at the same time. It was so great to have them both out at once. The nurse said that once they get rid of a couple of lines, I will be able to hold them both at the same time... I can't wait to see how they respond when they are close together again-- its going to be a very special moment.
Saturday, April 28, 2012
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Friday, April 27, 2012
"An Emotional Roller Coster"
Ever since day one everyone (doctors, nurses, other NICU parents) told us what an emotional roller coster being a parent of a preemie is. We have definitely learned what they meant. This morning we learned that Claire's creatinine went up to a 3.1. This was very unexpected as it had been dropping slowly for the past couple of days. The neonatologist also said that he did not expect to see the rise, and that they would test it again in the evening & again in the morning. It weighed on us all day.
This evening Joe and I (and Zane) went back to the hospital and waited on the labs to come back. We finally were told that her creatinine had dropped to 2.9. It was such a relief to hear that it is coming back down, and hopefully tomorrow brings us another drop. I think we'll sleep much better tonight knowing that it has come down slightly.
On a positive note, I was able to hold Claire for the first time today. Feisty little Claire was so calm the whole time I was holding her... it was amazing to finally have this time with her! Lily had her turn this evening too. I will post the photos tomorrow.
This evening Joe and I (and Zane) went back to the hospital and waited on the labs to come back. We finally were told that her creatinine had dropped to 2.9. It was such a relief to hear that it is coming back down, and hopefully tomorrow brings us another drop. I think we'll sleep much better tonight knowing that it has come down slightly.
On a positive note, I was able to hold Claire for the first time today. Feisty little Claire was so calm the whole time I was holding her... it was amazing to finally have this time with her! Lily had her turn this evening too. I will post the photos tomorrow.
Thursday, April 26, 2012
A Good Day
Tonight's update is going to be fairly short as I'm exhausted tonight, but didn't want to skip posting! The girls had a great day today.
Claire's creatinine dropped from a 3.5 to a 2.7. Her BUN (which has also been high) dropped too. The neonatologist is very pleased with this and is confident that the numbers will continue to drop. Both girls also had their breast milk increased... hopefully they will start gaining a little more weight soon. Claire is now 1 lb 10 oz and Lily is 2 lbs.
Lily had a good day too, I was able to hold her for quite a while this afternoon. Tomorrow is Claire's turn to be held-- I'm so excited to finally get to hold her!!
*Late last night we were told that Lily's PICC line was removed because it had clotting in it. They don't think her leg has a clot because the end of the needle had no clotting & because her leg looks okay. It may or may not be put back in tomorrow... the nurse said she may be on a high enough feeding to not need it anymore.
Claire's creatinine dropped from a 3.5 to a 2.7. Her BUN (which has also been high) dropped too. The neonatologist is very pleased with this and is confident that the numbers will continue to drop. Both girls also had their breast milk increased... hopefully they will start gaining a little more weight soon. Claire is now 1 lb 10 oz and Lily is 2 lbs.
Lily had a good day too, I was able to hold her for quite a while this afternoon. Tomorrow is Claire's turn to be held-- I'm so excited to finally get to hold her!!
*Late last night we were told that Lily's PICC line was removed because it had clotting in it. They don't think her leg has a clot because the end of the needle had no clotting & because her leg looks okay. It may or may not be put back in tomorrow... the nurse said she may be on a high enough feeding to not need it anymore.
Wednesday, April 25, 2012
One week down!
Lily and Claire turned one week old today-- it's definitely been the craziest week of our lives. It feels good to have made it through week one though! The girls also turned 29 weeks gestational age yesterday.
Claire's creatinine level dropped from 3.8 yesterday morning, to 3.5 today! Seeing this number go down is the best feeling in the world. The neonatologist said that now she is peeing a LOT. So, her kidneys are still learning what to do... they put her on extra fluids today and increased the temperature in her bed to try and even things out. They don't want her to get too dehydrated. She's still doing very well on her nasal cannula, and was on room air for a large part of the day.
Lily is still very stable. Her head scan did show a grade 1 brain bleed, which Dr. Zach said is more like a bruise. He isn't overly concerned about it, and they are seen quite often in preemies. They will, of course, watch to make sure it doesn't turn into a larger bleed. She is still doing fairly well on her nasal cannula. The nurses have to adjust her oxygen every so often, but overall is doing just fine.
On a side note, I think tomorrow I'm going to find Joe a nursery rhyme children's book... I caught him singing the Notre Dame fight song to Lily. We can't let that happen.
Claire's creatinine level dropped from 3.8 yesterday morning, to 3.5 today! Seeing this number go down is the best feeling in the world. The neonatologist said that now she is peeing a LOT. So, her kidneys are still learning what to do... they put her on extra fluids today and increased the temperature in her bed to try and even things out. They don't want her to get too dehydrated. She's still doing very well on her nasal cannula, and was on room air for a large part of the day.
Lily is still very stable. Her head scan did show a grade 1 brain bleed, which Dr. Zach said is more like a bruise. He isn't overly concerned about it, and they are seen quite often in preemies. They will, of course, watch to make sure it doesn't turn into a larger bleed. She is still doing fairly well on her nasal cannula. The nurses have to adjust her oxygen every so often, but overall is doing just fine.
On a side note, I think tomorrow I'm going to find Joe a nursery rhyme children's book... I caught him singing the Notre Dame fight song to Lily. We can't let that happen.
Tuesday, April 24, 2012
April 24, 2012: Day 6.
Today was a good day. Lately we've learned to appreciate the little things & to really not take for granted good days... especially days when the girls are doing well! This morning I received a call from Dr. Zach, a neonatologist, who informed me that Claire's creatinine levels dropped from a 4.0 to 3.8. Any drop in her creatinine is a huge deal and a huge step in the right direction. Hearing this made our day!
Lily had dropped weight earlier this week. She went from 2 lbs 3 oz (birth weight) to 1 lb 9 oz. Today her weight was 1 lb 15 oz. She also upped her feeding to 1.5 ml an hour of breast milk. Claire is on the same feeding that was set on Sunday, 0.5 ml an hour. Tomorrow she will likely go up a little more. Claire is off phototherapy and Lily is back on it. This is normal, and we were told the other day it would probably happen. Both girls are doing very well with their breathing. Lily has been on a nasal cannula for a couple of days, and as of tonight Claire is also on the nasal cannula. It is so nice to finally get to see their faces! They are both breathing almost all on their own, and only relying on oxygen very minimally. Tonight Joe was able to hold Lily for the first time. He was so nervous beforehand but it went great & she seemed to love her time with her daddy.
The nurses keep telling me how much they love the girls & how feisty little Claire is, even when she was struggling a bit and even though she's the smaller of the two. Lily has been so stable and reassuring for us. We definitely have two fighters; we are so proud of their progress!
Lily had dropped weight earlier this week. She went from 2 lbs 3 oz (birth weight) to 1 lb 9 oz. Today her weight was 1 lb 15 oz. She also upped her feeding to 1.5 ml an hour of breast milk. Claire is on the same feeding that was set on Sunday, 0.5 ml an hour. Tomorrow she will likely go up a little more. Claire is off phototherapy and Lily is back on it. This is normal, and we were told the other day it would probably happen. Both girls are doing very well with their breathing. Lily has been on a nasal cannula for a couple of days, and as of tonight Claire is also on the nasal cannula. It is so nice to finally get to see their faces! They are both breathing almost all on their own, and only relying on oxygen very minimally. Tonight Joe was able to hold Lily for the first time. He was so nervous beforehand but it went great & she seemed to love her time with her daddy.
The nurses keep telling me how much they love the girls & how feisty little Claire is, even when she was struggling a bit and even though she's the smaller of the two. Lily has been so stable and reassuring for us. We definitely have two fighters; we are so proud of their progress!
Monday, April 23, 2012
The world of the NICU
The Neonatal Intensive Care Unit can be an emotional roller coster. The past five days have been so crazy that it's hard to differentiate what happened on which day. Our hardest day was Saturday, when we were told by a neonatologist that they were unsure if Claire's kidneys were working... or if they ever would work. If her kidneys don't work, she would almost positively be too small for dialysis. Claire's kidneys have been the hurtle we've been hit with the hardest. Aside from her kidneys, both girls have been doing very well. On Saturday, April 20th we decided to have them baptized. It was a very special moment for our family. It was especially nice because we were able to have each set of Godparents there even though it was put together on short notice.
Lily and Claire both started off on a ventilator. As of today, Lily is on a nasal cannula doing almost all breathing on her own. Claire is on CPAPP and like her sister, is breathing almost completely on her own. Yesterday they started taking breast milk, which is also a great step. We're hoping that they can move into a twin room soon... it will be so nice to have them share a room and be together again!
On Sunday the 22nd I was able to hold Lily for the first time. It was a little intimidating with all of her wires and whatnot, but it was the best feeling in the world. She kept her eyes open for a long time and while I was holding her, her breathing increased and she hardly needed oxygen at all. When our time was up, she cried a little bit... I'm so excited to continue kangaroo care with her & to soon be able to hold Claire.
Like I mentioned earlier, our greatest hurtle so far are Claire's kidneys. Her creatinine levels have been high and getting higher, so we're hoping and praying that it starts to lower soon. The creatinine levels tell us if her kidneys are filtering and doing their job. Please continue to keep Lily and Claire in your thoughts and prayers. We have a long road ahead of ourselves and the support from our family and friends has been greatly appreciated. Thank you, thank you, thank you! We'll continue to update as often as possible.
Lily and Claire both started off on a ventilator. As of today, Lily is on a nasal cannula doing almost all breathing on her own. Claire is on CPAPP and like her sister, is breathing almost completely on her own. Yesterday they started taking breast milk, which is also a great step. We're hoping that they can move into a twin room soon... it will be so nice to have them share a room and be together again!
On Sunday the 22nd I was able to hold Lily for the first time. It was a little intimidating with all of her wires and whatnot, but it was the best feeling in the world. She kept her eyes open for a long time and while I was holding her, her breathing increased and she hardly needed oxygen at all. When our time was up, she cried a little bit... I'm so excited to continue kangaroo care with her & to soon be able to hold Claire.
Like I mentioned earlier, our greatest hurtle so far are Claire's kidneys. Her creatinine levels have been high and getting higher, so we're hoping and praying that it starts to lower soon. The creatinine levels tell us if her kidneys are filtering and doing their job. Please continue to keep Lily and Claire in your thoughts and prayers. We have a long road ahead of ourselves and the support from our family and friends has been greatly appreciated. Thank you, thank you, thank you! We'll continue to update as often as possible.
Welcome to the World Lily Grace and Claire Sophia!
On the morning of Wednesday, April 18th I woke up to my perinatologist doing his morning rounds. He asked how things were going, and I told him that I was okay but not feeling Baby B (Claire) move much... this wasn't uncommon because of her lack of fluid, but something felt wrong that morning. He ordered a biophysical profile and said that a tech would be in later. A biophysical profile rates the baby 0-10, ten being the best grade. It ranks the babies movement, tone, fluid, and practice breathing. Both girls had a biophysical profile done three days prior and both passed well. The tech finally came in a little after 5:00. I knew almost immediately something was wrong, and when I asked I was right. Claire scored a 0 out of 10 on the biophysical profile. The tech said she was going to contact my doctor(s) ASAP and they would determine the plan of care.
Shortly after, I was told that I would be going in for an emergency C-section. It was so scary going from a laid back day to prepping for surgery. I called Joe and he was there within 15 minutes... our parents also arrived before they took me to the OR. I had a completely natural labor/delivery with Zane, so I was unsure of what to expect. Luckily, I have a great OB and my favorite resident was there. They talked me through everything & Joe did great with the whole surgery. Lily Grace was born first, at 8:24 pm weighing 2 lbs 3 oz. Claire Sophia was born at 8:25 pm and weighed 1 lb 6 oz. I couldn't see them because of the covering, but I got to see Joe's face and reaction to seeing them, which was priceless. I was told Lily came out with her eyes open and moving, but not crying. When Claire came out, she cried & had the sweetest and softest cry. It was the greatest sound in the world.
I was not able to see the girls right away because they were immediately taken to the NICU. I was taken to recovery. When I was finally able to leave recovery and go upstairs to my room, I was unable to stop and see them at the NICU because they were still placing lines. We went upstairs and I stayed up until 3 am. I wouldn't sleep until I saw them. I was finally was taken downstairs to see them, and I couldn't believe how tiny, perfect, and beautiful they both were. Lily and Claire were already loved so much.
(Joe before the c-section)
Shortly after, I was told that I would be going in for an emergency C-section. It was so scary going from a laid back day to prepping for surgery. I called Joe and he was there within 15 minutes... our parents also arrived before they took me to the OR. I had a completely natural labor/delivery with Zane, so I was unsure of what to expect. Luckily, I have a great OB and my favorite resident was there. They talked me through everything & Joe did great with the whole surgery. Lily Grace was born first, at 8:24 pm weighing 2 lbs 3 oz. Claire Sophia was born at 8:25 pm and weighed 1 lb 6 oz. I couldn't see them because of the covering, but I got to see Joe's face and reaction to seeing them, which was priceless. I was told Lily came out with her eyes open and moving, but not crying. When Claire came out, she cried & had the sweetest and softest cry. It was the greatest sound in the world.
I was not able to see the girls right away because they were immediately taken to the NICU. I was taken to recovery. When I was finally able to leave recovery and go upstairs to my room, I was unable to stop and see them at the NICU because they were still placing lines. We went upstairs and I stayed up until 3 am. I wouldn't sleep until I saw them. I was finally was taken downstairs to see them, and I couldn't believe how tiny, perfect, and beautiful they both were. Lily and Claire were already loved so much.
Prior to Lily and Claire's Birth...
My pregnancy with Lily and Claire was completely normal. Both my OB and perinatologist said that everything was going great at 23 weeks. I was told that I should come back for a visit in a month, but that both girls were right on target and both were weighing equally. Twins are always considered a high risk pregnancy. Identical twins carry an even higher pregnancy risk due to the fact that the babies are sharing a placenta. But, at 23 weeks the babies were the same size, so everything seemed to be going perfectly.
That perfect pregnancy changed very quickly because at 25 weeks I started feeling, "off." Something didn't seem right, and I called to see my OB that Friday. He was out of his office, so the nurse said that if I started having contractions or bleeding to go to the ER. Well, I wasn't having contractions or bleeding, so I decided to wait until Saturday to see how I felt. On Saturday morning I woke up again feeling like something was wrong. This time I also felt pressure, so I called Bergan's Maternity line and after talking to a nurse for a while, was told to come and get checked out. As I was getting ready to leave my water broke & we headed straight for the hospital.
After arriving to the hospital, my contractions were 1-2 minutes apart. It was confirmed that my water broke and I was given magnesium (to try and stop contractions) and a steroid shot (to help mature the babies lungs). Thankfully, after many shots and medicine, my contractions slowed down and they were able to stop labor. Until Tuesday morning, I was still having minor contractions and leaking amniotic fluid. Tuesday morning I finally saw my perinatologist for an ultrasound. I was told that baby A's water was extremely high and Baby B had barely and fluid at all. It was later confirmed that the girls had Unequal Placental Sharing. Baby B was also at a lower weight than Baby A. I had to have a procedure done called Amniotic Reduction. With this, they took a long needle and inserted it through my belly and into Baby A's sac. They removed 6 liters of fluid, and close to 10 pounds from her sac. I felt immediate relief (no more back pain or pressure, and it was easier to breathe). I was told that I would be monitored closely and likely would have to have more reductions done.
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